Thanks Mosquito for the Great Ride: Memoirs of a Life With Parabilities

By Jan Cocks-Salvemini

Thanks Mosquito for the Great Ride encapsulates the importance of family and the positive vibes on which families thrive.

Thanks Mosquito for the Great Ride not only celebrates inspirational stories from Jan’s life but encourages society to take up the positive words of ‘para-abled’ and ‘parability’, terms that align with Paralympics and paramedic.

Join Jan as she guides you on a journey through childhood, schooling, dreams coming true, hospitalisations, working, driving, travelling overseas, meeting Paul McCartney twice, pastimes, marrying, family life, and more of her life’s experiences.

• Language: English
• Publisher: DoctorZed Publishing
• Release date: Jun 22, 2022
• ISBN: 9780645466539

Jan Cocks-Salvemini

Life started in a normal manner for Jan as a healthy baby girl. But at ten months of age, she was bitten by a mosquito and became disabled. At this same time, she had bronchial pneumonia resulting in permanent lung disease. Jan prefers to be called ‘para-abled’ or having a ‘parability’, rather than ‘disabled’ and having a ‘disability’. Thanks Mosquito for the Great Ride is her first book. Jan lives in Adelaide, South Australia.

Book preview

CHAPTER 1

Family, Heritage, and a Country Start

It was a cool October morning in 2006, and I hoped it was going to be a good day – the day that I would finally learn whether or not the operation had been a success.

My husband Graham and I were sitting in my orthopaedic specialist’s office. It was a small room with a big desk occupying most of the space that wasn’t taken up by my wheelchair. I gazed out of the window at the view of uneven buildings beyond, as Graham and I chatted quietly.

After several minutes my orthopaedic specialist walked into the room and placed several x-rays side-by-side on the wall-mounted light box, before sitting down behind the desk. He was classically tall, blond, and handsome, and had a presence about him that was impressive.

He greeted us warmly, then drew our attention to the x-rays. There was the inside of my right ankle in all its glory, the lower leg bones and the three bolts that held my ankle in place. The bolts were white and looked like a child’s attempt to make a triangle. I tried to read my specialist’s face before he spoke. After ten weeks in hospital—eight weeks longer than expected—I didn’t want to wait another minute to find out what my future held.

He looked into my eyes and said, ‘The bone hasn’t healed. There is another operation we can do, but it will take longer. It is a bigger operation and may not work, because your bones are weak and starting to crumble.’ He paused, before gently uttering the words, ‘You may have to get used to never walking again.’

Ten little words, but as they left his lips my eyes filled with tears and a feeling of anguish moved through me from deep inside my stomach. He went on talking, but I could no longer hear. My thoughts were on fast-forward. I wiped the tears away and apologised for not hearing what he had been saying. He told me that Graham could fill me in and asked if I would like to think about the operation and get back to him. I said that I did want time to think about it, and that I would let him know.

On the way home, Graham tried to go over what the specialist had said. He told me that my leg bone was being held together by cartilage that could give way at any time. I didn’t want to talk. I had already decided not to have another operation. My thoughts turned to amputation. I knew if I had my foot chopped off that I may not be a suitable candidate for an artificial leg, but I decided that it was the way to go. After all, if it didn’t work I would be no worse off.

I had already been in the wheelchair for a long time. Although I can only use my left hand I had still been able to drive myself to the shopping centre and use my wheelchair successfully once I was there, even though my method for getting around was a little unconventional. I controlled the chair by putting my left leg on the ground while pushing the wheel along with my working hand. It sounds odd, but worked very well for the most part.

The occasions when it got interesting were when I encountered a slope. If I had to go up a slope then I would need to get enough momentum. At the shopping mall this meant starting on the far side of the car park crossing, waiting until there were no cars, and then getting up as much speed as I could. If I wasn’t moving fast enough then I would get halfway up the ramp into the mall, before rolling back down and doing my best to stop before I was back on the crossing. The whole situation was so ridiculous that I would get the giggles. Sometimes someone would ask if I would like a push up the ramp. I always appreciated being asked, rather than having people assume that they could just take over and push me.

The other interesting situation was when I realised that the shopping mall walkway was on an incline. One day I was pushing myself along and suddenly discovered that I was on a downhill slope. I tried to slow myself down but couldn’t get control. I looked down and screamed out to a group of teenagers who were mooching along in front of me, ‘Get out of the way, I’m dangerous!’ Well, they moved fast. When I got down to the bottom and managed to stop myself I said to them, ‘When you woke up this morning you didn’t know that you’d have to save yourself from an old duck in a wheelchair,’ and we all had a good laugh.

In spite of the bad news from my orthopaedic specialist, I knew it was vital that I had a go at getting back to walking. I have a chronic lung disease, and walking helps keep my lungs working to the best of their ability. I only have three out of the five lobes of my lung left, and there is scarring on both my lungs. I made my mind up to speak to Graham and our son Lee about what I saw as the best way forward, and decided that sooner was better than later.

That night after dinner, I told them I didn’t want the operation. I knew it would be useless as my bones were crumbling. I said that I’d decided my foot was passed its ‘use-by’ date, and I wanted it chopped off. Before I finished speaking they both got up and walked away. I understood their reaction and decided to leave it, so I put the kettle on for a cuppa.

The next day, I went to my doctor to talk it through with him. He stopped my little speech about my foot being passed its useby date, and said, ‘No, I don’t want to talk about this!’ I smiled and replied, ‘You’re my doctor, you have to listen.’ When I pointed out that my lung disease meant that I needed to keep as healthy as possible, and so walking was extremely important, he agreed that I was right. We made an appointment for Graham and Lee to go in and talk everything through with him, but before the day arrived my doctor rang me and said he’d done some research and found a company that made boots which would allow me to keep my right foot and enable me to walk. The boot would be designed to fit me comfortably, just under the kneecap. At the back of my leg it would curve in comfortably to hold my knee firmly in place, allowing me to walk. I immediately agreed that it was a good idea. I felt so excited to have a solution that would keep everyone happy. It was worth a try, at least.

Graham drove me to my appointments with the boot manufacturers. First came the plaster cast to create the mould, and then all the fittings. I chose to have the boot made in black, because I could wear a black shoe on my left foot and not many people would notice the difference. There were a lot of frustrating teething problems before we got it absolutely right for my needs, and at times I felt that perhaps it was just a waste of everyone’s time. Finally, the boot was complete and I got to walk unaided, very shakily at first, but gradually the boot became second nature. It was such an amazing feeling of freedom.

When I was out of the house I decided that a walking stick was an intelligent way to go, as I didn’t want to take the chance of a fall. After seeing an elderly gentleman on television using his walking stick to protect a woman from being attacked, I figured I had a legal lethal weapon with me whenever I left the house. There is always a positive if you think hard enough.

About two months after I regained my freedom with my boot, I had a follow-up appointment with my orthopaedic specialist. Graham and I were sitting in the waiting room when my specialist called my name. I stood up and made my way into his room, with Graham following.

My specialist’s jaw dropped open and the words tumbled out of his mouth, ‘What are you doing?’

With a huge smile on my face I said, ‘I am walking.’

‘Yes, but how?’ he asked, incredulously.

I unstrapped the boot and he examined it for some time. I told him I was very happy with the boot and would be pleased to pass on the details of the company to him. I believe that he now has other patients walking with the aid of these boots, who may otherwise have had to spend the rest of their lives in wheelchairs.

Even though my orthopaedic specialist had believed we’d come to the end of the road, my general practictioner looked outside the box to find a solution that was less dramatic than amputation. No matter how much knowledge you have, it’s so important to continue searching for new ways of seeing things.

***

As a small child, I became very aware that I could manipulate everyone. Well, everyone except my dad. But as I grew older I realised I needed to work out who I really was. I decided that I was different, but so was everyone else. It is as simple as that. Somewhere along the way people will find labels for us all, one way or another, because they look at us from their perspective of life.

People say I am disabled, and that’s okay. The reality is that everyone has some sort of disability, just as each of us has certain abilities. For example, after an operation on my right hand, I learned to do my shoelaces up with one hand. You may think that is clever. However, if you were offered your dream job, but the catch was that the dream job was in Denmark, wouldn’t you learn Danish? Doing my shoelaces up with one hand is the same thing – it is an ability I acquired to meet my needs.

I prefer to be called ‘para-abled’, rather than ‘disabled.’ This word is smooth sounding and partners well with ‘paramedics’ and ‘Paralympics.’ The words ‘disabled’ and ‘disability’ are negative and sharp sounding. Not one single person in this world has immunity against acquiring a parability. If you or a loved one gained a parability what would you rather be called—para-abled or disabled? Para means ‘alongside of’ in Ancient Greek, and I believe that this is an accurate description of people with physical and cognitive differences—our differences place us alongside others, not behind. We are equal human beings.

For this reason, from this point on I will use only the words ‘paraabled’ and ‘parability’, rather than ‘disabled’ and ‘disability.’

People can’t imagine being me, but I am fine with that. I wouldn’t want to be anyone else. I am so happy being me. Having my parability comes with certain challenges—the hardest of which is putting up with ‘do-gooders.’ It is important to point out the difference between people who do good and ‘do-gooders.’

People who do good respect everyone as an equal. They ask people with parabilities if they can help, and if the answer is, ‘No thanks, I am fine’ then they say, ‘Okay, I am just over here if you want anything.’ They don’t ask if they can help and then disrespect the answer by taking the para-abled person’s independence away. My independence is as important to me as yours is to you.

Do-gooders, on the other hand, get their self-worth from ‘helping’ people, and think that those around them will be impressed with their efforts. Do-gooders can so easily underestimate what other people are capable of. They make assumptions that if someone has a parability that they couldn’t possibly achieve a task, because they are sure that if it were them, they wouldn’t be able to manage.

For example, I had to stop going to a particular club because the people drove me nuts with continual comments such as, ‘Watch that step’, ‘I’ll get your drink for you’, ‘The seat closest to the door will be good for you’, and, ‘Let me know when you need to go to the toilet and I’ll come with you and help.’ This is caring taken to the extreme. Seriously, treating someone with a parability as though they are a helpless child instead of treating them as an equal is likely to make them feel so distressed on the inside, even if they must politely say ‘Thank you, I am fine.’

I have been para-abled for more than 69 years as I write this. I am an expert in lived experience. Do-gooders are amateurs. I am far from perfect, mind you. I loved my power as a child, as I realised I could play the game of using my parability to get out of things I didn’t want to do. I was, in those days, the only para-abled child in my school, as far as I was aware. The teachers and other students had no experience with para-abled children.

One girl, Judith—a lovely girl with bright red hair and chronic asthma—used to worry about me a lot. I was probably guilty of bringing on some of her asthma attacks, now that I think about it, but as a child I was not the least bit interested in why Judith had her attacks, I just got upset when she did. I was more interested in playing the game of using my parability to get out of things I didn’t like doing. I had everyone wrapped around my little finger. I saw it as fun.

I realised that I had a hold over adults, and I felt powerful. I loved every minute of it and revelled in the attention. Because I was constantly distracted by playing my power games, I didn’t concentrate on learning. This meant that my future wasn’t as easy as it could have been. Even so, I did enjoy discovering how to do things to suit my lifestyle. Despite the gaps in my education I didn’t have to copy what others did. I found my own way.

I was born Janice Mary Gardner on 22nd January 1950, in the small town of Millicent, in the South-East of South Australia. I am very proud of my heritage, and am grateful to the long line of people who came before me, and made it possible for me to arrive in the world. They came to Australia from different parts of the world, and lived through hardship, wars, and the depression—but they also found love and happiness within the complexity of life. My family history has been passed down by word of mouth. None of my ancestors wrote anything down, and so a lot of their experiences have fallen through the cracks of time, never to be heard of again. However, the decisions of my ancestors, all the way from the distant past, right through to my parents, have brought me to the point of documenting the fantastic highs and dreadful lows of my life, so that there will be a more permanent record for future generations, and particularly for our son, Lee.

***

I was born a happy and very healthy baby, and was the only daughter of Harry William and Irene Laura Nellie Gardner (nee Andersen). Our family home at that time was in the small country town of Mount Burr, in the South-East of South Australia.

My dad was born in Bishop Stortford, England, on the 1st of February 1919. His father, William, was an Australian stretcher-bearer soldier during the First World War, and his mother, Daisy, was an English nurse, working in a London hospital. William received a stomach wound due to an explosion, and was transported to the hospital where Daisy worked. She was his nurse, and over the course of his recovery they fell in love, and then married. Their first child, Harry, my dad, was three months old when they headed for Australia on the ship RMS Lucie Woermann. During the voyage, my dad won first prize in the ship’s ‘Under Six-Months Baby Competition.’ After arriving in Adelaide, South Australia, they settled in Cheltenham, a western suburb of Adelaide.

Dad always joked that he crawled out from England as soon as he could. But I know he was proud of his heritage, and always called himself a ‘Pommy bastard’, a moniker that his mates also used. This was back in the days when it was given and taken as a jovial expression.

My mother was born on the 1st March 1919, one month to the day after my dad’s birth. My mother was born at Alberton, a western suburb of Adelaide. Alberton was the suburb next to Cheltenham, where Dad was to grow up.

My maternal grandmother was born in Broken Hill, New South Wales, and my maternal grandfather, Niels Emil Andersen, was born in Denmark. Niels Emil, who was a seaman, jumped ship in Port Adelaide as an illegal immigrant and met my grandma. He heard that if he signed up with the Australian Army he would automatically become an Australian citizen, and so that is what he did. He fought in France in the First World War, and served in the American Merchant Navy in the Second World War. One of my cousins, Paul Andersen, told me that they were responsible for shipments of weapons. Grandpa always sent money home to his family.

Grandma and Grandpa met at Port Adelaide. Grandma was the second youngest in a family of six sisters and one brother. Grandma’s sisters never approved of Grandpa being Danish. In their eyes he was a foreigner, and they never fully accepted him.

Over the years Grandma became angry and unforgiving of Grandpa. I could never understand her anger. I have a memory of sitting at her kitchen table and asking if she had loved Grandpa when they got married. She told me that she had, and that was the end of the conversation. I had hoped for more of an explanation that would make sense of the complexity of their marriage, how their love had got lost, and why. I was being shielded from all the facts, of course. I never saw him drunk, I didn’t experience his anger or violence, and had no knowledge of his womanising. I later found out that he was always in trouble on the ships, as there are records showing he spent time in the brig, due to being drunk and involved in fights, but this is all I know of his past. I wish I knew the back-story of his life, so that I might understand why he carried such huge anger. Apparently his brother, George, had the opposite personality and was a loving, and much loved, man. Grandma said she had married the wrong brother.

Dad signed up for the army in 1940, at the beginning of World War II. He was one of the first Australians to do so. He was posted to the Middle East and then to New Guinea, serving in the Army Engineers Corp.

Mother and Dad first met at school. Mother told me she thought he was the biggest show off in the school. Dad was expelled after standing up to a teacher who continually singled him out and victimised him. Dad’s revenge was to push a wardrobe on top of the teacher, and to then sit on top of the wardrobe. All hopes of a fresh start were dashed when he discovered that his teacher at the new school was a friend of the very teacher he had pushed the wardrobe on to. He continued having trouble at the new school.

Dad had an outgoing, fun-loving personality, a combination that was not acceptable at school, and so he was always in trouble. His mother was very strict, and determined that her children would grow up to be model citizens, so his naturally exuberant personality meant that he didn’t get the love from his mother that he needed. At the age of twelve he had a breakdown after the death of his grandmother, who had been the primary source of love and affection for him. Dad recovered, and I believe the experience helped to shape the wonderful man he became.

Mother and Dad met again when they were seventeen. Dad was working as an usher at the Ozone picture theatre in Alberton, and Mother was working in the lolly shop next to the theatre. She had not long been out of hospital, after suffering from tuberculosis. Dad was too shy to ask her out, so he asked her brother, Keith, who he knew from school, to ask her if she would go out with him. Mother’s reply was, ‘If Harry Gardner wants to take me out he can ask me himself!’

So he did.

They dated from 1936 until Dad went to war in 1940. They then wrote to each other all through the war. Mother kept the letters until the last years of her life, when she offered those special letters to me. I felt that they should stay with her, but she misunderstood and told Dad that the letters no longer needed to be kept, and so they were thrown away, lost forever.

Dad got five days’ leave from the army, and on the 3rd June 1942 he married my mother. After the wedding Mother stayed living with her parents until the war was over. When Dad returned to Australia in 1945 the government offered him a job at a sawmill at Mount Burr.

Mother and Dad made a fine picture as a young, good-looking couple, ready to embrace country life. He was a handsome, solid-built man of about six feet tall, with blue eyes and blond hair that went darker over the years. He was a very sociable man, with a lovely sense of humour, and could get away with saying just about anything. He had a very strong, deep voice. He loved his sports and won trophies for cricket in the late 1940s. In his senior years he won trophies for lawn bowls, while proudly playing for the Lockley’s Bowling Club. I treasure those trophies.

Mother was a very pretty young lady. She was slim, with blue eyes and light brown hair, which she curled with rags and then rollers. She always reminded me of Queen Elizabeth II. Mother was a very sensitive, gentle, and caring person.

Mother found it hard to be accepted in Mount Burr. She loved cooking and would ask the country ladies for a recipe of something that they had made, be it a special tart or a wonderful meat dish she had tasted. They obliged by giving her the recipe, but one or two deliberately left an ingredient out so that mother had no success with it. When mother realised what the ladies were doing it affected her confidence, as she was a very sensitive person. However, with encouragement from friends, she eventually became a confident cook. She was also good at sewing, and kept the housework under control far better than I have ever succeeded in doing.

When I was very young, Mother had a luncheon at the home of a woman whose son called her ‘Mother.’ This made an impression on my mother, and so when she came home she asked if I would call her ‘Mother’ and, of course, that was fine with me. Over the years it has been suggested that it sounds too formal and cold, but I always said it with love and warmth.

So there we were, a happy, healthy and stable country family. I was content, and although I now live in the city I still have a great love for country life.

I fitted into the swing of things for the first ten months of my life. However, in November of 1950 I became ill with the flu, which turned into bronchial pneumonia. During my illness, without anyone noticing, I was bitten by a pesky little mosquito, which was carrying a disease called Murray Valley Encephalitis. The mosquito had got the disease from an infected bird, and then passed it on to me. It didn’t take long before Mother realised that there was something seriously wrong, as I became limp and started grunting. Mother went to seek help from the next-door neighbour, Mrs Guerin, who was also a wonderful friend. It was decided that I should be taken to the hospital.

I was admitted to Thyne Memorial Hospital at Millicent, where I remained for three weeks. After an assessment was made on my health, the latest drugs were flown in from Adelaide. Mr Court, from the chemist shop at Millicent, met the plane and took the drugs to the hospital. It was thought that I had polio. I also had bronchial pneumonia, but my condition was not improving. As my condition became critical, doctors at the Adelaide Children’s Hospital recommended that I should be airlifted to Adelaide. Mother accompanied me on the aeroplane, which was met by an ambulance to rush me to the hospital. The dreadful shock and fear of losing her beloved baby was a feeling I was to experience myself later in life. It was only then that I realised how horrendous my illness